Health Information

Stroke: Should I Move My Loved One Into Long-Term Care?

You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.

Stroke: Should I Move My Loved One Into Long-Term Care?

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Get the facts

Your options

Care for your loved one at home. This may include part-time
care at home with a home health aide or nurse or time in an adult day
care.

Place your loved one in long-term care.

Key points to remember

People who have had a stroke need a safe,
healthy, structured environment. Some families are able to provide this at
home. But in other cases, long-term care in a center is a better
choice.

Many of those cared for at home will later have to be moved
to a long-term care center.

Caring at home for someone who has had
a stroke can take a lot of time and work. It also costs money if you hire
part-time help. Caring for a loved one at home also may take time away from
other areas of your life. Every family has different needs and limits to think
about.

By using adult day-care programs and part-time help—whether
hired or through family and friends—you may be able to keep your loved one at
home longer.

Remember that your own health, both physical and
emotional, is as important as that of the person you're caring
for.

Deciding to move your loved one into long-term care does not
mean that you have failed as a caregiver.

When brain cells are
damaged or die, the body parts controlled by those cells don't work like they
did before. The loss of function may be mild or severe. It could be short-term
or permanent. How well your loved one recovers depends on how much of the brain
is damaged, where the damage is, and how fast the blood supply returns to the
damaged cells.

Many people who have a stroke recover. But a
stroke can cause very serious problems. Of the people who survive a stroke, 15
to 30 out of 100 will have a permanent loss of some function, and about 30 out of 100
will need long-term care within 6 months of the stroke.1

Your ability to care for a loved one at home
will depend on his or her level of disability, your health, and the amount of
support that you have from family members or outside help.

After a
stroke, your loved one may have trouble with:

Movement. Your loved
one may not be able to walk or to use his or her arms. This is usually because
of weakness or paralysis on one side of the body.

Speech and language. Your loved one may not be able to speak,
read, or write. Also, he or she may not be able to understand what someone else
is saying.

Thinking and reasoning. He or she
may not be able to think clearly. The stroke may cause changes in
behavior.

Senses. Your loved one may not be
able to feel when something or someone touches parts of his or her body, such
as the arms or legs.

It could take a long time for your loved one to regain
speech and other skills. And some skills may not come back completely.

Many people who have a stroke will have some long-term problems with
talking, understanding, and decision-making. They also may have behavior
problems that affect their relationships with family and friends. They may need
help learning how to act in social situations.

Your loved one
could have other problems that happen right away or within months to years
after a stroke. They include:

Weight loss, if the
person has trouble swallowing and does not eat well.

Seizures.

Skin sores (pressure sores) or blood clots within deep veins if the person sits or lies in one position for a
long time.

Shoulder pain.

A stiff joint that cannot be straightened if the person holds
the affected arm or leg in the same position for a long time.

Depression.

Infection, especially
pneumonia or a
urinary tract infection.

Tight muscles and muscle spasms in the affected arm or
leg.

People who have had a stroke may act differently than
they did before. They may be slow, cautious, and disorganized when they do
unfamiliar activities. They may seem anxious.

The level of care
and help your loved one needs may increase if his or her condition gets worse.
Basic activities like eating, dressing, bathing, using the bathroom, and simply
moving around may be harder or impossible for the person to do alone.

Taking care of your loved one at home may get too hard for you, both
physically and emotionally.

"Nursing home" is a phrase commonly used to refer to any long-term care
center, but there are several kinds of long-term care. Each provides different levels of care, assistance, and services. The quality and costs of care and services at long-term care facilities vary
widely, and options vary from community to community.

Community-based services may offer transportation or meals at home.

Assisted-living and residential care facilities usually offer private housing and provide a wide range of services, including meals and cleaning services.

Skilled nursing facilities provide nursing care, up to 24 hours a day. This type of long-term care includes medical care in addition to meals, cleaning, and personal needs.

Special care units focus on the needs of people with dementia.

Continuing-care communities offer
several levels of care. They offer assisted-living care to full nursing care in
the same place.

Home health care can range from physical and speech therapy to nursing care at home. A family member can also provide home care.

Compare your options

Your
loved one lives in a care center. You can visit as much as you want.

The type of care you choose depends on whether your loved one can
take care of his or her daily needs and on what the family can afford.

Your
loved one has personal care, meals, and other needs met.

In a nursing home, your loved one also can get medical
care.

A care center may have activities and social outlets to keep
your loved one involved and happy.

Staff members are trained to
help people keep up their daily-living skills as much as
possible.

You may be able to focus on your relationship with your
loved one, not on his or her daily care.

You may feel guilty if you think that you should be caring
for your loved one.

You won't know how your loved one is doing at every moment of the
day or be able to make sure that he or she is treated well.

Care at
a nursing home or other center can cost a lot.

Care for your loved one
at home Care for your loved one
at home

You take care of
your loved one's needs at home. This may mean helping with cooking, eating,
going to the toilet, bathing, and dressing.

You need to be able to
make sure your loved one is safe.

You may be able to get part-time help with a home health aide,
adult day care, or respite care.

You can be sure
that your loved one is okay at all times.

You can spend more time with your loved one.

Care at
home costs less than at a center.

You may feel that your loved one
will be happier at home.

Caregiving can be very hard on your body and your
emotions.

You may have little time for yourself.

Your loved one
may not be safe if you can't provide constant supervision.

Your
loved one may have other health problems that need more care than you can
give.

Personal stories about moving a loved one into long-term care after a stroke

These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.

I had always
told myself that I would never put my husband, Jorge, in a nursing home, and I
kept him at home as long as I possibly could after his stroke. But he never
seemed to recover from his disabilities. He couldn't go to the bathroom on his
own or feed or dress himself. My bad back made it impossible for me to help
him. I was afraid I would end up in a hospital myself with no one to turn to
for help with Jorge. I just didn't feel I had a choice. I visit him every
afternoon, and we watch our favorite shows.

Sophia, age 66

My husband
and I thought about putting my mom in a nursing home, but we've decided to keep
her here with us for now. We visited several different facilities, but we
couldn't find one nearby that we felt comfortable with. If my mom were in a
nursing home, I would probably spend so much more time worrying about her that
it just wouldn't be worth it. Fortunately, we can afford to hire some part-time
help so that we have time for work and other activities. I'm not sure we could
keep doing this without that help.

Joanne, age 51

My dad had a
stroke about a year ago. For most of the time since then, he's been living with
my wife and me and our kids. Taking care of him is a lot of work, and we don't
have any other family nearby who can help out. And with our jobs and the kids
and other responsibilities, we just can't give him the level of attention he
needs. I think he'll get better care in a nursing home than we can give him
here.

Bob, age
49

As long as Howell doesn't develop any
complications or have another stroke, I plan to keep him at home with me. He's
doing fairly well, and our kids live nearby and help out a lot. Every Saturday,
one of them comes and gives me an entire day off to myself. But some days it's
really hard, and I think to myself, "Will I have the strength to do this in
another 5 years?" He's still my husband, though, and I know he would do the
same thing for me if the shoe were on the other foot. I just wouldn't feel
right letting other people take care of him.

Edith, age 65

What matters most to you?

Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.

Reasons to choose long-term care

Reasons to care for your loved one at home

I don't feel that I can care for my loved one's health problems.

I feel that I can care for my loved one's health problems.

More important

Equally important

More important

I'm worried that I can't give my loved one constant care and supervision.

I feel sure that I can give my loved one constant care and supervision.

More important

Equally important

More important

I wouldn't feel guilty about having other people care for my loved one.

I would feel guilty about other people taking care of my loved one.

More important

Equally important

More important

My loved one and my family can afford a care center.

My loved one and my family can't afford a care center.

More important

Equally important

More important

My other important reasons:

My other important reasons:

More important

Equally important

More important

Where are you leaning now?

Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.

A care center

Home care

Leaning toward

Undecided

Leaning toward

What else do you need to make your decision?

Check the facts

1.

Do all people who have had a stroke need to move to a care center?

YesThat's not right. Some families are able to provide care at home. But in other cases, long-term care in a center is a better choice.

NoYou're right. Some families are able to provide care at home. But in other cases, long-term care in a center is a better choice.

I'm not sureIt may help to go back and read "Get the Facts." Some families are able to provide care at home. But in other cases, long-term care in a center is a better choice.

2.

Should you think most about your loved one's needs and not your own when deciding about long-term care?

YesThat's not right. Your loved one's needs are important. But your own health is just as important.

NoThat's right. Your loved one's needs are important. But your own health is just as important.

I'm not sureIt may help to go back and read "Get the Facts." Your loved one's needs are important. But your own health is just as important.

3.

Can part-time help or respite care help you keep your loved one at home longer?

YesThat's right. Part-time help may help you keep your loved one at home longer. You may use respite care or part-time care at home or in an adult day care.

NoSorry, that's not right. Part-time help may help you keep your loved one at home longer. You may use respite care or part-time care at home or in an adult day care.

I'm not sureIt may help to go back and read "Get the Facts." Part-time help may help you keep your loved one at home longer. You may use respite care or part-time care at home or in an adult day care.

You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.

Stroke: Should I Move My Loved One Into Long-Term Care?

Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.

Get the facts

Compare your options

What matters most to you?

Where are you leaning now?

What else do you need to make your decision?

1. Get the Facts

Your options

Care for your loved one at home. This may include part-time
care at home with a home health aide or nurse or time in an adult day
care.

Place your loved one in long-term care.

Key points to remember

People who have had a stroke need a safe,
healthy, structured environment. Some families are able to provide this at
home. But in other cases, long-term care in a center is a better
choice.

Many of those cared for at home will later have to be moved
to a long-term care center.

Caring at home for someone who has had
a stroke can take a lot of time and work. It also costs money if you hire
part-time help. Caring for a loved one at home also may take time away from
other areas of your life. Every family has different needs and limits to think
about.

By using adult day-care programs and part-time help—whether
hired or through family and friends—you may be able to keep your loved one at
home longer.

Remember that your own health, both physical and
emotional, is as important as that of the person you're caring
for.

Deciding to move your loved one into long-term care does not
mean that you have failed as a caregiver.

FAQs

What happens after a stroke?

When brain cells are
damaged or die, the body parts controlled by those cells don't work like they
did before. The loss of function may be mild or severe. It could be short-term
or permanent. How well your loved one recovers depends on how much of the brain
is damaged, where the damage is, and how fast the blood supply returns to the
damaged cells.

Many people who have a stroke recover. But a
stroke can cause very serious problems. Of the people who survive a stroke, 15
to 30 out of 100 will have a permanent loss of some function, and about 30 out of 100
will need long-term care within 6 months of the stroke.1

Your ability to care for a loved one at home
will depend on his or her level of disability, your health, and the amount of
support that you have from family members or outside help.

After a
stroke, your loved one may have trouble with:

Movement. Your loved
one may not be able to walk or to use his or her arms. This is usually because
of weakness or paralysis on one side of the body.

Speech and language. Your loved one may not be able to speak,
read, or write. Also, he or she may not be able to understand what someone else
is saying.

Thinking and reasoning. He or she
may not be able to think clearly. The stroke may cause changes in
behavior.

Senses. Your loved one may not be
able to feel when something or someone touches parts of his or her body, such
as the arms or legs.

It could take a long time for your loved one to regain
speech and other skills. And some skills may not come back completely.

Many people who have a stroke will have some long-term problems with
talking, understanding, and decision-making. They also may have behavior
problems that affect their relationships with family and friends. They may need
help learning how to act in social situations.

Your loved one
could have other problems that happen right away or within months to years
after a stroke. They include:

Weight loss, if the
person has trouble swallowing and does not eat well.

Seizures.

Skin sores (pressure sores) or blood clots within deep veins if the person sits or lies in one position for a
long time.

Shoulder pain.

A stiff joint that cannot be straightened if the person holds
the affected arm or leg in the same position for a long time.

Depression.

Infection, especially
pneumonia or a
urinary tract infection.

Tight muscles and muscle spasms in the affected arm or
leg.

People who have had a stroke may act differently than
they did before. They may be slow, cautious, and disorganized when they do
unfamiliar activities. They may seem anxious.

The level of care
and help your loved one needs may increase if his or her condition gets worse.
Basic activities like eating, dressing, bathing, using the bathroom, and simply
moving around may be harder or impossible for the person to do alone.

Taking care of your loved one at home may get too hard for you, both
physically and emotionally.

What kinds of long-term care are available?

"Nursing home" is a phrase commonly used to refer to any long-term care
center, but there are several kinds of long-term care. Each provides different levels of care, assistance, and services. The quality and costs of care and services at long-term care facilities vary
widely, and options vary from community to community.

Community-based services may offer transportation or meals at home.

Assisted-living and residential care facilities usually offer private housing and provide a wide range of services, including meals and cleaning services.

Skilled nursing facilities provide nursing care, up to 24 hours a day. This type of long-term care includes medical care in addition to meals, cleaning, and personal needs.

Special care units focus on the needs of people with dementia.

Continuing-care communities offer
several levels of care. They offer assisted-living care to full nursing care in
the same place.

Home health care can range from physical and speech therapy to nursing care at home. A family member can also provide home care.

What are the choices for part-time care?

Some
people find that part-time help allows them to keep their loved one at home for
a longer time. Part-time care may take place either at home or in an adult day
care.

As in long-term care centers, home care can provide whatever help a person needs. For example, a home
health aide can help the person bathe and wash clothes and linens.

Adult day care and
respite services take care of the person so that the regular caregiver can take
a break. This may relieve some of the stress of caregiving.

Why might your loved one's doctor recommend long-term care?

Your loved one's doctor may suggest long-term care
if:

Your loved one's health gets worse, and he or she needs more
care than you can give.

Your loved one has several health problems
that require skilled nursing care.

Your own health is at risk, or
you could get injured from caring for your loved one (such as from
lifting).

Long-term care may offer a safer, more controlled
situation.

2. Compare your options

Move your loved one into
long-term care

Care for your loved one
at home

What is usually involved?

Your
loved one lives in a care center. You can visit as much as you want.

The type of care you choose depends on whether your loved one can
take care of his or her daily needs and on what the family can afford.

You take care of
your loved one's needs at home. This may mean helping with cooking, eating,
going to the toilet, bathing, and dressing.

You need to be able to
make sure your loved one is safe.

You may be able to get part-time help with a home health aide,
adult day care, or respite care.

What are the benefits?

Your
loved one has personal care, meals, and other needs met.

In a nursing home, your loved one also can get medical
care.

A care center may have activities and social outlets to keep
your loved one involved and happy.

Staff members are trained to
help people keep up their daily-living skills as much as
possible.

You may be able to focus on your relationship with your
loved one, not on his or her daily care.

You can be sure
that your loved one is okay at all times.

You can spend more time with your loved one.

Care at
home costs less than at a center.

You may feel that your loved one
will be happier at home.

What are the risks and side effects?

You may feel guilty if you think that you should be caring
for your loved one.

You won't know how your loved one is doing at every moment of the
day or be able to make sure that he or she is treated well.

Care at
a nursing home or other center can cost a lot.

Caregiving can be very hard on your body and your
emotions.

You may have little time for yourself.

Your loved one
may not be safe if you can't provide constant supervision.

Your
loved one may have other health problems that need more care than you can
give.

Personal stories

Are you interested in what others decided to do? Many people have faced this decision. These
personal stories
may help you decide.

Personal stories about moving a loved one into long-term care after a stroke

These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.

"I had always told myself that I would never put my husband, Jorge, in a nursing home, and I kept him at home as long as I possibly could after his stroke. But he never seemed to recover from his disabilities. He couldn't go to the bathroom on his own or feed or dress himself. My bad back made it impossible for me to help him. I was afraid I would end up in a hospital myself with no one to turn to for help with Jorge. I just didn't feel I had a choice. I visit him every afternoon, and we watch our favorite shows."

— Sophia, age 66

"My husband and I thought about putting my mom in a nursing home, but we've decided to keep her here with us for now. We visited several different facilities, but we couldn't find one nearby that we felt comfortable with. If my mom were in a nursing home, I would probably spend so much more time worrying about her that it just wouldn't be worth it. Fortunately, we can afford to hire some part-time help so that we have time for work and other activities. I'm not sure we could keep doing this without that help."

— Joanne, age 51

"My dad had a stroke about a year ago. For most of the time since then, he's been living with my wife and me and our kids. Taking care of him is a lot of work, and we don't have any other family nearby who can help out. And with our jobs and the kids and other responsibilities, we just can't give him the level of attention he needs. I think he'll get better care in a nursing home than we can give him here."

— Bob, age
49

"As long as Howell doesn't develop any complications or have another stroke, I plan to keep him at home with me. He's doing fairly well, and our kids live nearby and help out a lot. Every Saturday, one of them comes and gives me an entire day off to myself. But some days it's really hard, and I think to myself, "Will I have the strength to do this in another 5 years?" He's still my husband, though, and I know he would do the same thing for me if the shoe were on the other foot. I just wouldn't feel right letting other people take care of him."

— Edith, age 65

3. What matters most to you?

Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.

Reasons to choose long-term care

Reasons to care for your loved one at home

I don't feel that I can care for my loved one's health problems.

I feel that I can care for my loved one's health problems.

More important

Equally important

More important

I'm worried that I can't give my loved one constant care and supervision.

I feel sure that I can give my loved one constant care and supervision.

More important

Equally important

More important

I wouldn't feel guilty about having other people care for my loved one.

I would feel guilty about other people taking care of my loved one.

More important

Equally important

More important

My loved one and my family can afford a care center.

My loved one and my family can't afford a care center.

More important

Equally important

More important

My other important reasons:

My other important reasons:

More important

Equally important

More important

4. Where are you leaning now?

Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.

A care center

Home care

Leaning toward

Undecided

Leaning toward

5. What else do you need to make your decision?

Check the facts

1.
Do all people who have had a stroke need to move to a care center?

Yes

No

I'm not sure

You're right. Some families are able to provide care at home. But in other cases, long-term care in a center is a better choice.

2.
Should you think most about your loved one's needs and not your own when deciding about long-term care?

Yes

No

I'm not sure

That's right. Your loved one's needs are important. But your own health is just as important.

3.
Can part-time help or respite care help you keep your loved one at home longer?

Yes

No

I'm not sure

That's right. Part-time help may help you keep your loved one at home longer. You may use respite care or part-time care at home or in an adult day care.

Decide what's next

1.
Do you understand the options available to you?

Yes

No

2.
Are you clear about which benefits and side effects matter most to you?

Yes

No

3.
Do you have enough support and advice from others to make a choice?

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